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PARATHYROID and THYROID scans

I have a somewhat Unique situation.  I have CKD and I am Hypothyroid at age 44.  I also have Osteoporosis most likely from the above.  My Parathyroid has been high since 2006 ranging from 90-180.  My Calcium has been High ranging from 10.5 down to 9.5.  My Phosphorus has also been Low.  2 Nephrologists disagree - one thinks it is either Secondary, or Tertiery HPTH; the other Primary.  2 Different Endocrinologists disagree..Gees!  One believes I should have surgery, the other does not.  My Vitamin D has been Low before, but corrected.  Still HPTH as of this week and Calcium is 9.8.  I am getting a ionized Calcium, which I myself requested.  OK, another weird finding is that I did a Urine Calcium and it is Low...go figure.  I had a Sestamibi Scan and it was "Normal", even stating that the Thyroid was clear..  

BUT, here's the other weird thing; I also had an Ultrasound last year for the Thyroid (possible Nodules) and sure enough, there are indeed Multiple Cysts in both Lobes; Thyroid Echotexture is diffusely heterogenuous. And ill-defined hypoechoic areas throughout.  Whatever that means.  SO, the Endo said that this scan is "Normal" too.  

What to do?  I feel Awful, I am fatigued, depressed, losing hair, bones hurt, joints hurt, can't concentrate and forgetful- very forgetful..  I used to be annoyingly hyper and very active in life up until 2006.. even after a Kidney removal due to a rare disease in 1999, I was active, productive, useful, and wonderful muti-tasker.  They are all baffled and not sure what to do..  
Could the US that showed the Thyroid issues possible be showing Parathyroid issues as well?  Maybe there is some confusion there?  If that Sestamibi scan shows Nothing- why wouldn't it atleast say something about the Thyroid other than it is completely "Normal".  I am indeed being treated with Synthroid by the way...Getting even fatter- fatter than I have ever been..  

Am I missing something here?  Or are They missing something here?
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Avatar universal
Thank you very much for the comments Beck43...  Much appreciated.  As far as Estrogen, etc.  My GYN says it is normal, as I also thought that my issue was Peri Menopause - hair loss, weight gain, feeling bad, etc...(I haven't looked at those Labs though).  

Dr. Lupo, I thank you very much for your Opinion.   I am indeed getting yet another opinion...and as far as 25-OH-D and 1,25-OH2-D, It is in the good range as of 2 weeks ago.
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97953 tn?1440865392
MEDICAL PROFESSIONAL
Sometimes it is not easy to distinguish the cause of high PTH.
The calcium levels seem to be running high-normal to slightly high and with the low phos, the most common problem would be primary HPTH.

However, you have kidney disease which causes high PTH and you have low urine calcium.

Would repeat 24 hour urine calcium, check sprue antibodies (screen for celiac sprue which is common cause of calcium/vit D malabsorption), look at 25-OH-D and 1,25-OH2-D (ie both vitamin D's).

The negative nuclear scan adds nothing -- these are negative in up to 50% of patients with proven primary HPTH.

The ultrasound creates a confusing picture -- ie, tough (by your description) to sort out if there is a parathyroid adenoma given all the cysts.

With complicated situations like yours, going to an expert for third opinion (ie mayo or cleveland clinic) may be reasonable.

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Avatar universal
All I can add, is what I have been going thru for the last couple of months..

About 2 months ago, routine blood test bcz I was not feeling well showed elevated Calicum 11 & Potassium.  Week later Potassium normal, Calcium went down to 10.9.  Went to another dr for 2nd opinion (bcz also have female issues - I am 43 and have endometriosis & believe I am going thru peri-menopause).  This doctor said not only did I need more than likely a hysterectomy, but I was first going to need my parathyroid(s) removed bcz of the high calcium levels.  I went back to my family doctor, ask that he test my parathyroid (which he refused), and my Vitamin D levels, (which he also refusted) he said he wasn't not convinced that I had an issue.  Tested my calcium levels again, this time they came back normal....

Still have not found the answer, and still trying too.  But the couple of things I did learn is this.  not only Vitamin D, but Magnesium plays a huge roll in Calcium absorbtion.  Since you know at one point your Vit D was low, look into your Magnesium levels...  

And another thing I learn.  If you are taking Estrogen Replacement it will increase your Calcium levels.  Now, I am not, but I do believe w/my endometrosis, and the fact that I feel that I am peri-menopause, I have what is called Estrogen Dominance.  So if taking Estrogen Replacement can increase one's Calcium levels, then common sense tells me, then if you body is producing too much Estrogen, could that not lead to higher levels in Calcium...

The unique thing is this doctor took my calcium levels over a months span.  Just after my period my Calcium levels were the highest 11.0, just before ovulation 10.9, after ovulation 10.2.  

In all honesty, 10.4 is the top of the normal range for Calcium, the fact that yours was 10.5 at the highest is not that bad, and in the 9's is great.  

Remember high Calcium in the blood means you are not absorbing the Calcium into your bones, so you already looked into the Vit D which is great 1st step, now look into the Magnesium (which is hard to get in our diet these days); and if you doctor is better than mine, see if he/she will test your estrogen levels...  At 44, you are like me, we are preparing for that oh so wonderful "change of life...:...

If anything, please just keep me posted....
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